“P-O-OLLLLKA! I WANT POLKA!”
Aw, what’s he yellin’ about now? Whadya want, Joe? Polkapolkapolka! Sheesh!”
Joe and Marshall were the best of friends. Both men were born with cerebral palsy. The speech of both was often difficult to
understand. Both suffered from spastic
quadriplegia and had little control of their arms and legs. Both had been confined to wheelchairs from
the time they were children to their current age of around 60 years. They had been interned in an institution for their
entire lives. For most of that life, their
home was what was known as a “warehouse” – a large, government-run rural asylum
where they were day-after-day lifted by underpaid direct-care workers from bed
to wheelchair, showered, fed, wheeled to the same place in front of a window
and, at the end of the day, returned to their beds – a routine that seldom
varied. Their mental development,
already challenged by the cognitive impairment caused by the palsy, was further
impacted by the lack of any sort of intellectual stimulation.
When I met Joe and Marshall in the mid-1970s, they
were roommates in a smaller, privately-owned care facility that had been built
in response to efforts to end the centuries-long practice of warehousing
persons with disability. I was one of
those under-paid direct care workers mentioned earlier, having applied to the
center for what was meant to be a summer job while taking classes in Early
Childhood education (I ended up working there for two years). The difference in these new facilities was
that there was an attempt to provide more individualized attention – including speech
and physical therapy and an initiative to promote greater inclusion through participation
in activities outside of the institution.
Joe, for example, now had a language board attached to
the arms of his wheelchair. Working with
a speech therapist, Joe learned to use a head pointer (he had no use of his
arms) to signal a series of words and images, helping people to understand what
his limited speech precluded. Marshall’s
ability to communicate was more developed, so most of his therapy focused on improving
his physical flexibility. The friendship between the two men was based on
good-humored antagonism. Joe, with his
more limited speech ability, tended to loudly emphasize his desires and opinions
with animated grunts, groans and laughter, using his language board to let
staff know more exactly what he wanted.
Marshall, usually nearby, was always ready to chime in, seconding Joe´s
wishes, at times joking or playfully arguing about them.
Joe, a thick bodied man of eastern-European descent in
his mid-fifties, had two loves in his life:
Polka music and beer. The mention
of either would make him rock with pleasure and laughter. The former of these loves – Polka Music – was
easy to provide through the radio or a collection of cassette tapes. His latter love of beer was more difficult to
fulfill in the strict atmosphere of the institutional center – a situation that
I, as one of Joe´s primary care givers and natural born human rights rebel, soon found
a way to get around.
“I’m taking Joe outside for a stroll around the
neighborhood!” I would inform my supervisor “It´s a nice day.” Three blocks away from the center was a
neighborhood bar. I would wrestle Joe’s
wheelchair down a short flight of concrete steps, through the plate glass door
and over to a table. The bar’s regular
patrons would gaze at us curiously for a while before turning back to their
afternoon shot and a beer. I would order
a small draft beer (it didn´t matter what brand) with……..a straw. With me holding the glass. Joe would sip it
down, smiling all the time, ecstasy showing on his face. We would then hurry back to the center, happy
and content from our “stroll” around the neighborhood, registering the
excursion in the record of daily activities.
As mentioned earlier, I left the work after a couple of years, returning to my pursuit of some sort of college education. I eventually lost contact with Joe, Marshall and the other folks of the center, but assume that they spent their remaining years in one or another institution. I do know that the center I worked at closed down a few years later in the midst of a scandal involving negative reinforcement for a problematic resident. No matter how much reform is introduced into the care for people with different abilities and challenges, it will always be inadequate as for-profit budgetary considerations take precedence. I like to think that the combination that the mixture of caring people that worked there in the 70s had at least a temporary positive impact on the lives of those, like Joe and Marshall, who we were able to interact with. An occasional beer for a Polka lover or seeing people with a basic humanity may not be a big thing in the grand scheme of things, but it seemed to help back then.
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